Coping With Childhood Cancer

Early detection of cancer signs in children could save lives
By Glynis Horning

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Colleen and Mike Eddles were taking a brief break together in the Okavango when they had the call every parent dreads: “Robert’s not well,” their au pair told them from their Durban home. The week before, they had taken their six-year-old son to the GP to check out a small lump in his groin, and been told it was nothing antibiotics would not sort out. Now it was red and tender, and when the au pair took him back to the doctor, his spleen was enlarged and there was activity in his blood. The doctor advised a biopsy. Colleen and Mike rushed back and, two days later, on 31 May 2006, heard the words they feared most. “I’m sorry to tell you your son has cancer; acute lymphocytic leukaemia.”
 
“Why are you crying?” their pale but composed boy asked later, as sisters Megan, nine, Gilly, 14, and other family and friends gathered around. “You have baddies in your blood,” explained his father. “But doctors are going to bring in an army of goodies to fight them.”
 
That weekend the Eddles began to wrestle with the inevitable questions. Why them? And would their son be all right? In the eight months of intensive treatment that followed, they found answers “and incredible support” from the Durban paediatric haematologist who supervised Robert’s blood transfusions and chemotherapy injections and drips, from the psychologist who counselled him and them, and from the Childhood Cancer Foundation South Africa (Choc).
 
There is a bright side
 
What they learnt began lifting the fears that weighed them down. First, they were in no way “to blame”. It has been established that childhood cancers, which affect around one in every 600 children before the age of 15, are different to adult cancers, which are often linked to lifestyle factors such as smoking, environmental factors (pollution, radiation, sunburn), and genetics. Most have no discernible cause. “Some parents struggle with the fact that there is in most cases no easy answer; nothing or no one to blame,” says Prof Alan Davidson, associate professor in the Department of Paediatrics and Child Health at the University of Cape Town and head of Paediatric Haematology-Oncology at the Red Cross Children’s Hospital.
 
Second, the prognosis is amazingly good. The overall cure rate for childhood cancer has improved considerably over the past 25 years, even for aggressive types, Davidson says. And Robert’s type was the most common childhood cancer, one that progresses rapidly but responds well to treatments and has a good chance of curing. Children’s natural resilience is one of the biggest factors countering cancer. They tolerate treatment better than adults and have fewer side effects. Their cancers grow more rapidly than those of adults, so while, for instance, bowel cancer cells in adults double in about 300 days, those in children may double in 30 days or even 30 hours. But this more rapid growth makes these cancers more sensitive to treatment, and even those in stage four – the most advanced – can today often be cured.
 
Childhood cancers and treatment
 
Worldwide, the most common childhood cancers are leukaemia (around one in three of all cancers in under 15s), followed by brain tumours (around one in five) and lymphomas and neuroblastomas. Though in South Africa Wilms’ tumours (kidney cancer) are the third most common, Davidson reports.
 
Childhood cancers now have an overall cure rate of around 70 percent, rising to 80 percent for some leukaemias like Robert’s (which some 50 years ago stood at just five percent), and over 90 percent for localised Wilms’ tumours and Hodgkin’s lymphoma. This progress is due largely to the establishment of specialist childhood cancer referral units linked to major academic hospitals, which include support services, from laboratories to social workers and therapists, for a multidisciplinary team approach. It can also be attributed to medical advances. Chief among them, says Davidson, are improvements in the treatment of infections and other side effects, allowing for more intensive treatment; the advent of implantable ports and lines to take blood samples and deliver chemotherapy; and surgical advances like minimally invasive surgery and bench surgery, where organs are removed for surgery and then replaced. Other advances are the use of titanium clips to mark surgical beds for radiation treatment, new forms of radiation therapy to make it safer and more effective, bone marrow transplantation, and new biological agents.
 
In January 2009, Robert’s haematologist did a marrow biopsy and it came back clear. She kept him on medication and he had further chemotherapy and lumbar punctures every three months. Then in July 2011 this too stopped. Today he goes only for biannual checkups. “Strangely, this has been almost as hard for us as Robert’s treatment,” confides Colleen. “A security blanket – the routine reassurances of the tests and of the doctors and nurses, who have become like family – has been pulled away. Sometimes Robert asks ‘Can I get cancer again?’ And I tell him, ‘we can never say never.’ In the dead of night I still worry. But counselling has helped me deal with this, and with the anger you feel at times.”
 
Diagnosis and support
 
One of Colleen’s biggest comforts has been chatting with mothers of other children with cancer. “Whenever you think you’re having a bad time, there’s always someone at Choc who has had it worse than you, and you realise how much you have to be grateful for.”
 
While around 700 children diagnosed with cancer in South Africa are reported to the Children’s Tumour Registry each year, it’s believed that this is only a third of the actual number of sufferers. “The rest are either not reported, for example children who undergo surgery without being referred to an oncologist or who die before referral, or are never diagnosed and receive no treatment,” says Davidson.
 
In addition, many children are diagnosed only in the final stages when treatment has less chance of success. “Some parents first consult traditional healers or try alternative remedies, and even when they do use conventional clinics or hospitals, the cancers may go undetected for varying periods,” he explains. Many also struggle to raise the transport costs to hospital, which prevents them from bringing sick children back for chemotherapy or checkups.
 
This is where Choc helps, assisting where possible with transport costs and providing parental accommodation for families living far from town. “Our family has so much to be thankful for,” says Colleen, hugging Robert as he runs up for a photograph. Today he’s an engaging, energetic 11-year-old who has now started playing water polo. Confident beyond his years, he also speaks at blood donor rallies. “I want people to know about cancer in children, especially, so they can watch for signs and catch it early,” he says earnestly. “And I want them to be able to get stuff they need, like blood and bone marrow donations. I didn’t need marrow at my stage, but blood donations helped save my life.”
 
Check your child
 
If the following signs persist, they can indicate cancer:
 
  • lump in the abdomen, pelvis, head, neck, limbs, testes or glands (armpits, groin);
  • bulging eyeball, impaired vision, new squint, white spot in the eye;
  • enlarging head;
  • easy bruising or bleeding;
  • unexplained fever, loss of appetite and weight, pallor, fatigue;
  • unexplained headaches and vomiting and fits;
  • aching bones, joints or back;
  • easy fractures;
  • a change in balance or gait and
  • a change in behaviour or achievement of milestones.
 
Sms the name of your province to 34486 and a Choc representative will contact you. Or contact Choc: 086 111 2358 (Joburg), 086 110 6441 (Cape Town), 086 111 2182 (Durban), 012 323 3490 (Pretoria) or visit choc.org.za
 
If cancer is diagnosed, consult a paediatric oncologist, preferably attached to a specialist referral centre in a major hospital with a multidisciplinary team.
 
Parenting pointers
 
Dr Brenda Talbot is a Durban-based child psychologist with a PhD in the field of childhood cancer. Her son was diagnosed soon after birth with a life-threatening blood disorder and passed away in 2005 at age 21. She and Alta Bence, Choc’s psychosocial support services manager in Joburg, advise:
 
  • Answer your child’s questions honestly in age-appropriate terms.
  • Never lie; it breaks trust. Even giving blood is not painless, so explain that it hurts a bit but will be over fast if they stay still.
  • Illness and hospitals disempower, so empower your child with choices wherever possible – even just to offer their left arm or right when giving blood.
  • Encourage your child to play out fears with toys or in drawings – acknowledge and name their emotions, and listen actively.
  • Treat your child with cancer the same as others in terms of discipline; don’t overcompensate.
  • A young child may wonder if they’ve done something bad that made them sick – reassure them. The same is true for siblings, who may feel they’re to blame for the illness.
  • The sick child will receive attention and gifts; set aside one-on-one time and small treats for siblings too.
  • Know that a child with cancer has the potential to be as well adjusted as their healthy counterparts. Get counselling to help if necessary.
  • Encourage your child to participate as much as possible in ordinary activities – achievement builds self-image and socialisation is vital.
  • Some parents become intensely involved with the sick child, but others immerse themselves in activities like work – this reflects different coping styles to protect themselves from the reality of the situation.
  • Try to be involved in the illness as a couple so it doesn’t come between you.
  • If you have difficulty resolving differences, get professional help.

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